It is easy to be happy when you are healthy.
It is harder to know that this may not be true much longer.
People love to casually say,
“Enjoy every moment” or
“We all die some day anyway” or
“Life is fleeting.”
I know this already.
And I know it in a different way.
I don’t need to be told to
fight the good fight to beat it
or the key is to just stay strong
or that it’s mind over matter
or that I should pray for a miracle
or that I will be cured.
That’s nonsense.
Scientifically impossible in my case.
And so, when you say,
“No, that can’t be true.
There must be something that will cure you,
If you want it/pray for it/think it will be so,
You can be healed,”
What you do is force me to assert my knowledge,
Insist upon my diagnosis,
Explain the desperate nature of my disease,
Spend my time defending my sentence.
I know it’s what you wish.
I know you insist because you want it to be the case.
I know you’re grasping at straws,
Wanting to reassure yourself that bad things won’t happen to you,
That bad things don’t happen to good people,
That something awful won’t happen to me.
Trust me, I wish for it too.
But these things do happen.
It has happened to me.
The truth is that wishes don’t count for anything when you’re placing them against cell biology.
I know many healthy people who say the passage of time is bittersweet.
It isn’t a competition but I can tell you that this passage of time is different.
If you could feel it for just a moment you would know.
There is a difference between
Distant,
Hypothetical,
Potential,
Maybe…
and reality.
I have learned that being nervous about test results,
Worrying,
Wondering,
are not the same as the reality.
Reality is having your oncologist walk in the room
and when you say to him, “How are you?”
and he says, “Not good,”
you naïvely think it must be a problem with him,
or his family and
instead he ducks his head,
takes a breath,
looks at you, and says,
“Your test results were not good.
Your tumor markers are up.”
He knows I know what this means.
He waits for a moment and says,
“I think you have a metastasis.”
A few minutes later he says,
“You need to go get a chest x-ray right now.
Go across the street,
I will come over to the hospital and look at it immediately.
Wait for me there.
Then you need to schedule a PET scan as soon as possible.
Have you had any other unusual pain?
A cough perhaps?”
The room spins, the world stops.
My life didn’t end in that moment, but life as I knew it ended for sure.
No turning back.
Reeling, processing, shock.
All you can do is let your jaw drop,
the tears fall,
your body shake,
crumple.
Slowly,
deliberately,
as I looked at him
in a way that I never had in the six years he had been my doctor,
the only words that came to my lips in response
were to repeat over
and
over
and
over
and
over
again:
“Fuck. Fuck. Fuck. Fuck.”
Because that’s the only word that could capture how angry
and scared
and angry
and surprised
and angry
and shocked
and angry
I was.
I never have liked the term “to expire” rather than “to die.”
I started thinking about these words though.
We all have an expiration date.
I’ve never thought of it like that before.
We all have one.
It is as if I’ve grabbed a carton of milk without looking.
I took the one in front I guess,
The one with the rapidly approaching date they put conveniently at the shelf’s edge for people to grab when they’re not paying attention.
Except I did pay attention.
I did.
I was always paying attention.
No one was more vigilant than I.
I want to put this carton back,
I want to say it’s not mine.
I want to scream it.
This must be for someone else.
The date is too soon but I can’t trade it in for a new one.
No givebacks.
The problem is
I don’t know exactly what the date says.
Link to Twitter
As always, your prose floors me, cuts right through to the heart. No words; just hugs. xoxo
This keeps breaking my heart, and sometimes I think it would be better to look away, to stop following you, to stop watching and reading, checking in and waiting, that it would somehow be a healthier choice, a saner option to disengage. But then I realize “Lisa is dying.” Someone’s mother, wife, sister, daughter, friend is dying. You may not be literally mine, and yet you ARE mine, and for that reason, I won’t look away, won’t unsubscribe or ignore or wish it away. I will be a loving and kind witness to your reality, which in the end is the same for all of us. I will send you love and comfort, even though it would change the outcome one bit.
Jill – that was beautifully written and that is how I feel, that I must now bear witness to this remarkable woman.
You have said exactly what is in my heart.
Absolutely perfect response. Lisa is an inspiration.
Thank you Jill for finding the words for so many of us. Lisa, I love who you are and that you’re allowing us to be part of this scary process with you.
Love to you.
In reality with you…walking with you every.step of the way. Love your bold honesty.
Ooof. This post hurts–and clarifies something important about what it’s like when people foist their bullsh*t miracle cures on others.
For some reason, this blog post reminded me of a song…
Life In A Bottle – Linda Perry
http://www.youtube.com/watch?v=-esmzl1zgIk
Oh, Lisa. I don’t know you, but like the woman above, I won’t turn away.The brutal honesty of your post took my breath away & makes me wish you (and everyone else living what you are) could have a different story. SHOULD have a different story. I am one of the ‘lucky’ ones: 10 yrs past my diagnosis of non-Hodgkin’s lymphoma, and here I am. Onc told me without tx I would have been dead within 2 years. But I got to pick a different milk carton. I wish you could have as well : ( I may be a stranger, but i’m going to be here cheering you on as you live the best life you can, for as long as you can.
Fuck. Fuck. Fuck. Fuck.
Yes Lisa, I agree. Fuck.
Yes, love to you. I won’t look away either.
Lisa,
I never know what to say after reading your posts except to say they move me more than I know how to acknowledge. It’s like I feel you in my gut. As a community we need to cherish you for as long as we are blessed to have you.
I wonder if when I am lying in a bed with rails, or sitting in a wheelchair somewhere, feeling so tired or so lost, if I will have the good fortune to think of you. I hope I will. Your gift to me has been knowing you. I want to hold onto your words and your courage. I don’t want to grow so old that I can no longer remember you.xx
Molly,
I love your statement “I don’t want to grow so old that I can no longer remember you”. Beautiful. It is going in my journal. Thank you.
Every time I read your words, your brave honesty touches me and leads me to appreciate life / time. Thank you for putting things into perspective.
It is impossible to not read your words and feel your fear and pain and poise and grace. You are living through what scares us all to our core, that we would KNOW we are dying. I do not know how you do it, come here, share with us, for yourself and others. But I also know you can’t not do it. I hope there is catharsis, release, relief if only momentary to know that your legions of followers are, in the moment of their reading, abiding with you, crying for you, wishing it weren’t true but knowing that it is.
From one woman, one mother to another, I wrap you in the warmest embrace a cyber stranger can.
Your words make everything different – sharp, painful, real. Thank you.
I know you are just writing what is in your heart and your mind, but that you can do it so beautifully, in the face of such sadness, is a testament to what a special person and writer you are. Like others, there are times when I wonder whether I should disconnect, bury my head in the sand, and try to pretend that you’re reality is an impossibility. But I can’t, and I won’t. If you have enough courage to face what you are, and do it with such grace, then I certainly can find the little courage it takes to be there with you and for you, in whatever way I can. xo
Lisa nobody could have written this better than you. Just pure, raw truth. xo
Fuck. Yup. Damn. Damn. Fuck. Damn.
While none of us know our expiration date, I can say I am willing to walk the journey along side of some whose expiration date seems to be nearer than anyone wishes. I will walk along side of you if you want. You are walking solo, but NEVER alone. Never ever alone. I know that from all the love I see here. Your words are so inclusive, even when we wish they were not.
Lisa, your searing honesty and beautiful writing are simply stunning here. Though I’m just another cyber-stranger, I just wanted to tell you that, to send you love and support, to bear witness to your living the truth of your life. Thank you for what you bring to the world.
Hugs and prayers from Denver. K.
Dear Lisa – I think of you so often. There are some here like Jill who express so well what it seems we are all feeling. Our age, sex, health, wealth and previous connection to you likely varies widely though we all are here for you.
You give us something of yourself. I had an MRI of my spine yesterday. I was worried that I can’t lie flat because of excruciating pain. In the first half-hour I exhausted all of my usual diversions. By the second half my eyes began to lightly weep and I thought of you – your strength and your tears and how tenuous life really is. I am you – and you are we.
Our expiration dates do vary. I picked up a bag of almond flour weeks ago and noticed today the expiration date was over two years ago. My reference book says “the almond was a symbol of watchfulness and promise”. So I will watch. I promise. Because you are not only you but you are our mother, our daughter – ourselves.
Peace
Lisa, your words are so powerful. We are beside you, behind you in this journey. Thank you!
Meg
My medical situation is different from yours, but I recognize so much of what you say. “The truth is that wishes don’t count for anything when you’re placing them against cell biology.” “My life didn’t end in that moment, but life as I knew it ended for sure.”
Thank you for continuing to tell it true.
PS I’m in a clinical trial testing Everolimus (Afinitor) for my cancer, though we don’t know if I am getting the drug or the placebo which even the doctor doesn’t know. So we may be taking the same drug. I think of you every morning when I take my pills.
As always, your posts make me think deeply. The recent posts are your outpouring of grief, anger and yes, even appreciation for the moments you do have and I am glad you share all these intense feelings through your writing. Though I don’t know you personally, I feel that you have let me into your head and your heart and that binds us together. I think of you often!
As human beings, something inside of us usually wants to look on the bright side. I don’t know why that is. We want the best for ourselves and the people we care about. Since there are no givebacks, no matter how hard we wish or hope, all there is left to do is the best we can with everything we have to work with. Heart wrenching post and the comments are equally heart wrenching. You pull so much out of your readers, it astounds me how powerfully your write. It is an honor to come here and something I highly cherish. Thank you Lisa.
Lisa, I’m another person that doesn’t know you personally but I’ve read every single post in this blog. Like others have so eloquently responded, I will also bear witness and won’t look away. Through your writing, I understand some of what it must have been like for two close family members who died of cancer back when I was a young woman. My loved ones didn’t give voice to what they thought and felt. Your powerful writing gives me a window into how it might have been (since everyone is different) and much to think about. I used to live in Fairfield CT and your tweets about flowering trees and gardens bring back memories. Loved the Dogwood Festival in early May and the tremendous abundance of dogwoods in every shade of cream and pink all over town.
Wow. You just basically wrote out so many of the words that are so often in my mind to say to the people around me–to try to explain to them how it feels to go through this. Thank you so very much for writing them and sharing them. I will be passing this along to some people.
Sending you much love.
A sister.
I don’t know you, lisa, but your words are profound and I’m left with none.
just abiding with you, with love and light.
Your words belong in a book… for so many reasons.
Thank you, as always, for your honesty.
There’s a lot of people walking this path with you in whatever way they can.
As always, you are in my thoughts.
xxx
How can we be so alone, and yet, so connected? My only conclusion is that our separateness must be an illusion. Your ability to show us the connection through our feelings proves it. Bless you for this gift.
I would not miss a word you write, Lisa. You don’t know it but you help me every single day as I travel this road of MBC. I could not get up in the morning if I didn’t reflect on the words you write.
You are filled with grace, poise, courage and love. Thank you for being my mentor. I believe in biology/science and nothing more. You are helping me make “sense” of my demise. I don’t know when it is going to happen but I know it will.
I hope when I take my final breath, I think of you and your beautifully written words.
Thanks you, Lisa.
I am speechless. You are amazing, and I feel so sad.
Beautifully said. No one can understand this unless they are going through it.
I am speechless Lisa. I think about you so often. I so admire your courage. You are such a gifted writer, who is able to make me cry after reading your posts!! Usually.. I only cry when I read my students papers… because the grammar is so horrendous!!:)
reading your post today is a mourning to the healthy people and an inspiration to those who walk in your shoes, of the seemingly inevitable; the impending. Lisa, you can only cope with this new reality in doses. At first you come to understand it with your head, and then, only over time, will you come to understand it with your heart. To acknowledge you are dying is to let go of the future. It is what will allow you, to peacefully and fully live only in the present. Be with those you can teach how you feel and take in stride those who, though with good intentions, tell you how to feel. I can only ask that you trust this stranger.
Wishing you emotional and spiritual strength.
FuckCancer. Your words and strength leave me speechless. And so sad. I don’t know you but I do. I hope you know how much you are loved and admired.
Yes, there is an ocean of difference between MBC and being in remission or knowing we are all going to die one day. I remember going for a test for suspected mets and my oncologist said, “We all come in and we all go out, like the tides move in and out.” It didn’t help at all and I’ll never forget how empty those words landed in my time of need.
You move me to tears as well and I too carry your words with me always.
Kim
Oh, this hurt my heart. Thank you.
Lisa, you have such beautiful power in your words – you so often, so perfectly give a voice to my feelings.
I often wonder how life would feel if everyone knew their “expiration date” and “healthy people” couldn’t pretend they’d be immortal. I wonder how life would feel if we wouldn’t have to justify that our cancer is not curable. I wonder how life would feel if everyone knew the difference between thinking “we’re all going to die some day” and knowing the statistical probability of surviving the next year. And I wonder how life would feel if I could fully ignore the knowledge I have and just live the day and enjoy the moment…
Thanks for another so sad, and yet so wonderful post, Lisa,
best of wishes for many good days still to come!
Sophia
Just one more reader–a newish one–here to thank you, Lisa. I wish I were as articulate as you, or even as some of your readers. But I will stumble along awkwardly rather than not express my enormous gratitude and admiration. You are incredible. Your honesty is rare, fierce, and sort of astonishing. Sharing this horrible journey with you–as much as that is possible–feels like a sacred and precious trust. I send you all of my long-distance thanks, strength, and embraces. No, I don’t know you. But strangers become something else entirely in the midst of such humanity. Thank you. I wish this were not happening to you. I pain for you. I wish there were more I could do. Thank you. We are here.
So poignant, Lisa. I’m in the same boat, on the same carton with an expiration date. And I feel like the contents are already spoiling. xo
Lisa, I get it. I get the utter frustration of this battle with cancer. I have recently been reluctantly inducted onto the team (http://paulblais.blogspot.com/2013/02/the-next-thing.html). The doc thought things were going well after two surgeries, but the cancer is becoming tenacious (http://paulblais.blogspot.com/2013/04/sunny-and-dark.html). This battle sucks.
I am not to the point of seeing the expiration date, but I am thinking about. It isn’t so much death that stands as the monster in the road, but rather not being here after death. I want to walk my daughter down the isle. I want to meet my son’s children. I would love to hold my wife’s hand through her old age. That is what eats me up.
I am so sorry for the progress of the cancer in your struggle. As of today, I am a follower of your blog. Thank you for the raw honesty. It is painful for us to read it, but much more painful for you to live it.
Love from a stranger,
Paul Blais
Lisa, I love reading everything you write. I especially think this comment is so true –
“What you do is force me to assert my knowledge,
Insist upon my diagnosis,”
when people ask you about an illness twice or with an open ending – like really???
I am wondering if any of your anger is changing…..
And, you did not pick your milk carton – it was given to you for no reason at all.
love, Marie
Thank you for sharing your truth in such an honest manner. Cancer was a distant word to us until our daughter was diagnosed with Acute Lymphoblastic Leukemia in September of last year, days before her 2nd birthday. We’ve since learned a ton about cancer, and that our odds are so much better than most, and that every day is made of the same stuff no matter what the bloodwork says.
Oh Lisa.. Google is making it harder for me to keep up with you (by hiding Reader & eventually discontinuing it) but I am reading this today. When my maternal grandmother died, I called my mother with the news and the first thing she said was “SHIT!”. I was taken aback, but now, after some time, I can get it. I think there is a time and place for obscenities and death and the diagnosis of incurable disease is certain a place for it.
I grieve for you and your family even now. Thank you for sharing with us.
Lisa, your words sing truer than true. I despise the insinuation that people can pray, think, wish or power their way out of pain and illness. My situation is not cancer but chronic intractable ear pain, which is considered non-fatal, even though people have been in such pain they have committed suicide. The attitude of finding the positive in the negative is hugely offensive to me.
hyperacusisearpain.com
Why attempt to maintain an attitude of finding positive in the negative? Why bother with wishing or praying, or thinking the bad away? Well, consider the alternative. Depression will undermine, rob one of recognizing the caring, love and beauty that is surrounding and sink you into a very dark place. Giving up on searching the positive is isolating. One’s ill situation, even at terminal one, is relative to how wide the scope your view of the world is. For example, in my dark hours – and I fall into them often, I remind myself that I’m not in a 3rd world or war ravaged country with my circumstance. I have family, friends even strangers that care. I have a home. You do matter to someone, now to me, even when not to yourself. You’ll leave a legacy; a footprint to those that follow.
One of your most powerful – and heart-wrenching – posts yet.
[…] healthy choices you make. And then you are facing the experience that writer Lisa Bonchek Adams describes so powerfully in this post. We must do […]
We all have an expiration date. I said those exact words to a friend when talking about my diagnosis. It’s not something that ever occurs to you until it’s staring you in the face. Thank you for putting into words all those things I’ve thought but couldn’t.
Your words are so honest, and need to be heard, more deeply than just ‘words’. Facing the end of your life involves so much more than the end of your existence. I always said, the title of my book would be: “Beyond My Expiration Date, and I’m Turning Sour”, but you seem to rise above that with your writing. Chanting with you, Fuck, fuck, fuck, fuck, fuck
Lisa – I have metastatic breast cancer as well. Feeling what you are feeling. Seeing my tumor markers inch up over the past few months. Waiting for the results of the most recent PET Scan wondering, waiting, dreading, fearing and holding my breath for what must be more bad news because in my new world of MBC there are only two things the oncologist may say at my monthly visit. That is to stay the course with the current medication or switch to a different one -knowing that there is a finite list of drugs they can turn to before they run out of options. There are more cereal choices in the grocery aisle than drugs available to treat cancer; More snack food choices. How can this be? How can there be more types of bread available than treatment for something so life and death? How did this happen? And yet, it has and it did happen to me too. I just don’t know what my expiration date is yet either. I am happy to be there for you in any way I can, just don’t ask me to wear a pink ribbon or a Komen t-shirt. In the mean time, I hope you can stay the course.
Dear Lisa, you reciver a warning that this bottel of life is about to finish, the truth is that all of us living life which is about to finish, but not all of us are lucky enogh to recive a warning. 18 years ago, I was lucky to recive that warning, it was when my doctor told me of my cancer, he said that he never saw any one alive in my stste, and i am about to die any step i take. I used my warning very well, that moment I made my choice- that until I die I want to be happy and if I have to die, then I wanted to die with a smile. that was the best choice i ever did. I relived 3 profesores from dealing with me ( they thoght cancer is uncurable, I thoght diffrent, so they and there way of thinking had to go) and I had the best time of my life, just because I know it could be over, and I was happy and I laghed alot, so much that my immune system became so strong, that within 4 and ahalf months, I was compleatly healed.
Lisa use your warning well, until you die, or heal, live, live like there is no tommorow, live like you never lived befor, live in the present of the moment, and enjoy, because with the warning of the cancer or with out, all of us one day will die, so why not live until then???
if you will start to live what ever you think life should be, then you increase your chances to heal- against all odds.
I think its very easy to heal cancer…. if you want more information on the principals of healing cancer, you are more then welcome to write me an e.mail. sheffa91@gmail.com
good luck on your journy back to the best life you could live in the now, regardless if you have cancer, or not. 🙂 remmber life is happenning right now. enjoy.
Very easy to heal cancer? Yeah, right. It’s great you have the answer and no one else does. I’ll just leave my reply at that.
cancer is all to do with the immun system. learn how to raise it naturally, and you may be surprised 🙂 good luck
What a pile of positive-thinking gone berserk.
Raining (what’s that?) the immune system naturally would cure cancer? How wonderful! I’m sure that somewhere, someone, is patenting the very idea at the moment. Or sitting by the phone waiting for the Nobel Prize committee to call.
Living your life to the fullest is one thing. implying that it’s a cure-all is not just ridiculous, but boarding on offensive.
YES. You are kind, Lisa!
ditto Lisa. There is NO evidence whatsoever, anywhere, that emotions can cause cancer, help it grow or cure it. There’s the theory as ‘gili’s’, that thinking positively might make us healthier, but one also has to consider that being healthier may instead lead us to simply think positively and that’s a good thing. Negative thinking leads one to worry more about woes. To bring back a point from a previous reply left, though it’s not easy at times, ‘take in stride those who, though with good intentions, tell you how to feel’.
warmest regards from a stranger. 🙂
Lisa,
Heartbreakingly poignant and so sad. Your words are hauntingly authentic.
You reached a very deep spot in my heart and I’ve been unable to forget you. You speak so honestly and so righteously; I can only admire you and wish you well on your journey. Do not let anyone tell you how to feel or what to think. I lost my daughter to invasive, inflammatory breast cancer – the two of you would have been good friends, never mind the cancer. You would have clicked right away. Just know that legions of us out here love you, even though we do not know you.
Hi Lisa, just wanted to let you know you are not alone on this shitty journey. I was diagnosed with cervical cancer mets last October and told I have 2 years( if that) to live. I can relate to every word you have written, especially Expiration date.
I go to my oncologist tomorrow to get the latest results from my CAT scan earlier in the week. Every month I hope for a miracle, but we both know that will never be.
I will follow your journey and pray that we both get to have a few more months/years quality time with our family and friends. Regards Diane.
You words are so raw and honest and I appreciate that so much. I am going to give your blog site to all my patients as I think they would all relate and realize they are not alone.
Dear Lisa,
I came across your blog and a lot of it resonates with me. I vividly remember the “what the fuck?” feeling when I was dx’d with metastatic ovarian cancer a year ago at the age of 44. When I was told that I was BRCA1+ a month later. When my original prognosis of 12-18 months after barbaric surgery and 7 rounds of chemo was generously revised to 2-3 years. I know what “scanxiety” and constant fear of recurrence does to your mental state.
You are very talented and very honest. I wish you and your lovely family all the best.
Lisa,
Hello today. I don’t even have the words. I just wanted to reach out to you over cyberspace. Just sending you a hello like this, one without any redeeming content value, helps me feel that at least I got to stop by, stop in, see you, say hello and then get on with my day.
My dearest friend Ellen, who was also my business co-founder, died of metastatic liver cancer a year ago. She struggled terribly for a year prior. We would have what I would call “drive-bys.” Quick calls where we wouldn’t say much but just breathe on the phone together, or I would drive past her house on a day she wasn’t up for visitors and she would look out the window and I would send funny texts from my car & leave little gifts at her door. Just to let her know that I was there for her and that I understood.
My hellos are my drive-bys to you. — Thinking of you, Lisa Lurie
This is very inspirational Lisa! Keep it up.